story and illustration by KAM REDLAWSK
Parents always say things like, “You’re one in a million!” In fact, I literally am. My name is Kam, and a warm welcome to all of you to my very first column! I am your quintessential Korean American. OK, that was a lie. Not quite. I was adopted from Korea, and my parents are a white couple from Michigan. Already having three homemade white sons, they thought that a little girl could perhaps whip those boys into shape and decided to adopt me. I was the Korean import. I came to America at age 4, and this was really the beginning point of what my memory would locate as the start of my life.
I grew up in the white suburbs of Midwest Michigan, and it wasn’t until age 12 that I realized I wasn’t white like my family or those around me. I mostly saw myself as just Kam, but the combination of staring back at the mirror and teasing from schoolmates, who liked to point out my differences, soon made me see how different I really was.
But the reason I am one in a million, give or take, is that I have been graced with an extremely rare disease called Hereditary Inclusion Body Myopathy (HIBM), which statistically touches about one in a million worldwide. Though it is a genetic disease, I did not meet HIBM until my early 20s, during what’s supposed to be the most productive time of a person’s life. Prior, I was running, playing sports, active and healthy. HIBM is a progressive and debilitating muscle-wasting disorder, and although progression is slow, it typically leads to complete and total disability.
So what do you do with news like this? Not to worry. I live anything but a disabled life. Having studied automotive and product design, I am an artist and illustrator, a traveler, a wanderer. I have skydived and swam in the Great Barrier Reef. This doesn’t mean I am not disabled because I very much am limited, and that will probably become more apparent as my column rolls on.
But I choose to live life against my fears and will try anything at least once. Because of my disease, I’m also an advocate, and some of you may recognize my name from previous stories KoreAm has done about my efforts to raise awareness about HIBM and money to fund the cure, which is actually within reach. As part of my advocacy work, I became an amateur blogger to share the story of my HIBM, but prior, I probably would not have considered myself a writer.
I tend to follow the lines of Twain’s “Write what you know.” And what you will find in my column is an array of stories about my life that will hopefully resonate with many of you—the things that sometimes hurt us, challenge us, frighten us, make us laugh, make us brave or weak and make us cry. Each of my columns will also feature one of my illustrations, which are another way I can share my experiences. The illustration running with this month’s column was drawn two years go. At the time, I could literally feel my steps slipping away from me, as I was fitted for my first wheelchair. I was saddened. This was a significant milestone—one that I had done my best to avoid, hoping I would make it to clinical trials and bypass the chair completely. If HIBM was like a tree, this is how it spreads, with a ball of yarn clinging to me, drawing me in closer and closer. But I titled the illustration, “It’ll Be Alright,” because this is what I tell myself as I push through the increasingly difficult stages of this condition.
Welcome to Green Green Grass. I hope you will follow me.
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Kam Redlawsk’s column runs every other month. To read more from Kam, visit greengreengrass.typepad.com or her official Facebook page.
This article was published in the September 2013 issue of KoreAm. Subscribe today! To purchase a single issue copy of the September issue, click the “Buy Now” button below. (U.S. customers only. Expect delivery in 5-7 business days).
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